Governor Cuomo has now signed legislation allowing Sudden Unexpected Death in Epilepsy, or SUDEP, to be listed as a cause of death on death certificates.

Ashley Edlund of Rochester WROC 8 aired this story Aug 23, 2017

to help raise awareness. See it here.

National Walk for Epilepsy
National Walk for Epilepsy is held in March on the National Mall in Washington DC. Get involved.

Learn about the Epilepsy Foundation.

Find out more here.

US Congress - House Resolution 298 (H.R.298)
US House Resolution 298 (Raising Awareness and Insight on Seizures and Epilepsy) was created to promote greater awareness and understanding about epilepsy among government agencies. The Epilepsy Foundation is actively looking for individuals to ask elected representatives to support this resolution. You can ask your representative to support it.
Seizure Dogs
They are an alarm system. They are helpers, protectors, and service providers. So-called seizure response dogs can be all these things and more.

Families hopeful new epilepsy legislation will raise awareness for SUDEP

Tammy Johannes and Erik Polkowski, Tanya's Trot organizers, attended the PAME Conference. This was an effort  to gain better knowledge, networking connections and outreach for raising the awareness and understanding of epilepsy for and through the Trot. It was also to better realize the possible outcome that many are unaware of with epilepsy, SUDEP. Please learn more about this from the SUDEP Institute. Many new ideas, research efforts and dedicated individuals were met and spoken with. It is a great event full of promise and hope.

In November 2010, Tanya Johannes passed away. Her death was attributed to SUDEP, Sudden Unexpected Death in Epilepsy. Tanya’s Team was formed in her honor and memory.

Marissa Perlman of New 4 WIVB Buffalo filed this story September 5, 2017

to help raise awareness. See it here.

Tanya’s Trot: Akron family raises money for a cure for epilepsy after daughters death


Pame Conference

2011 National Epilepsy Walk Highlights

Tanya's Team

Raising Epilepsy awareness, one step at a time